Writing, Chronic Pain and Common Sense

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Category Archives: Guardianship and Adoption

Every generation that ever occupied this country has been split. They either fought for change, or fought for the current status quo.
People who came over on the Mayflower lived a hard life, but still felt it was up to them to tell the natives their beliefs were wrong and tried to convert them to Christianity. Blood was spilled, cultures lost. Then came slavery, one greedy group felt it was ok and made piles of money from it, others knew it was wrong, Again, we took up guns and went to war to abolish this established practice. More blood was lost.

Then came a woman’s right to vote, work and make an equal wage for equal work, have children or not have children, drive or partake in numerous human activities. There were sits ins, arrests, violence, family fights and death over this issue. Eventually laws were passed to insure these rights. (They could still use some tweaking) Our businesses had to be forced to add safety standards to the workplace to save lives. They were forced to shield moving conveyor belts, protect workers from chemicals and provide safety equipment. This didn’t happen from the goodness of someone’s heart, it took laws to make it happen.

Civil liberties were a big one. We locked people of Japanese descent in camps, we denied ethnic families not born in this country access to housing and schooling. Our country clubs denied admittance to people of a certain race and schools turned away children with differing skin color.

In each instance, people were hurt, arrested or killed. In each instance it took laws, not popular by people with deep personal beliefs, to make a change, but change was made. Guess what? The country survived with these laws! All races can mingle at school, women can work and fight for a fare wage, people can not be denied housing over skin color. We became a nation that let people be who there are. You can still adhere to your religion and follow your beliefs. You can bring your children up with these beliefs, but you can not use them to deny fellow humans basic rights.

It is time to let those who are gay have the same freedom and rights as the rest of us. Let them marry, divorce, rent an apartment, work and carry insurance. This would be another basic human right forced on us by law and we will survive this as we have all other changes. Added bonus? You can still worship in any way you see fit and make sure your soul ends up in the resting place of your choice. We can make this change, keep your soul intact and not spill any blood or waste anymore hard-earned tax payer money on the fight.

Don’t write to me with tales of women or minorities who still face discrimination, unsafe work conditions or a woman fired because she wouldn’t sleep with the boss. I know these things still exist and people deal with it daily, but it is dealt with far less with the laws than without the laws. There will always be immoral, greedy people who do what they need to do to feed their needs.

Long story short, people who pay taxes have the right to reap the same benefits from this country as the rest of us. Law is law and religion is religion. If we continue to deny them the right to marry, be in a hospital room with a dying loved one or take away their right to an estate, we should stop collecting taxes from them as they are not full citizens of this country.

Nancy, such a common name for such an uncommon woman. I have my disease to thank for placing Nancy in my life. Alone, in pain and looking for help I turned to an online support group. It was here I met my long time friend “C.” “C” and I got to know each other after he threatened to boot me off the group for joking around with a few folks, something against the rules. (Not so much against the rules, but i was doing it in the wrong way)

Long story short, he and I became friends. When he founded the FMS Community I jumped on his train to help however I could. I became a moderator on the support group and began to work with both “C” and Nancy. Egad, was that really eighteen years ago?

No slacker herself, Nancy, a former financial whiz from Boston, stricken with her own chronic pain founded a 501(3) non-profit org. called the “CSSA.” She was president, treasurer, researcher and public relations. She and a small group of others collected donations, networked with medical professionals and published a newsletter mailed to subscribers, all while dealing with her own health and family issues and…keeping up with her job as moderator for the Fibom-L online support list. She is also a talented photographer with work in quite a few collections, I am lucky enough to have one of her framed works.

I watched with cautious eyes when I realized she was caring on a “flirtation” with my pal “C.” Not out of jealousy as I am in a long-term, stable relationship, but out of concern, not wanting my friend to be hurt by a conniving woman! Worry quickly morphed from respect for a strong woman to love for a dear friend. Her and “C” met in person and never parted again. They not only joined in marriage, they blended the two organizations and we became one happy family, with Nancy handling the financial reins and legalities of maintaining a 501(3) non-profit standing.

Fast forward to 2012, my strong, intelligent, compassionate friend who wielded her computer and cell phones like weapons as she cut a swath through research, misconceptions, myths and lack of support for very real, very painful conditions, can’t even turn on her own computer.

Diagnosed with Stage 3 dementia at a young age she can’t remember how to use her computer or dial a phone. Her short-term memory is sketchy and her health is failing.

I am angry, PISSED that the universe has handed her one more blow. It’s as if taking away her health and striking her down with chronic pain wasn’t enough. The fates that be weren’t happy until they took her mind too!

I am grieving for “C.” He was a thriving musician, disc jockey and printer before chronic pain and other conditions took control of his life. He is a caring, open-minded, generous and intelligent man who had lived alone for far too long before he found Nancy. Now he struggles with her comfort and his own feelings of loss and anger.

IT’S NOT FAIR DAMMIT AND IT PISSES ME OFF!

Those who can approach their doctor and mention the term Fibromyalgia without getting laughed out of the office as the doctor tells you it is all in your head can thank Nancy. In our day nobody believed our pain was real. We were fed anti-depressants and told to lose weight and exercise more. Hell, I was 120lbs soaking wet with a highly physical job, and they STILL told me to lose weight and exercise, and maybe see a shrink.

Nancy fought day and night, shelling out thousands of personal dollars to find answers. She offered support and information to those floundering in a sea of medical professionals that thought of us as a joke. She met and worked with researchers on the cutting edge of progress. She formed friendships with medical professionals and authors who suffered from chronic, unexplained pain and fatigue who wanted to find answers. She worked with Devin Starlanyl and others, keeping up with research and funneling that knowledge to us via CSSA.

This is a personal blow for me, but I want every person who can now talk to their doctor about FM, CMP, IBS, Sjogrens and other conditions without feeling like a mental case to give credit, and thanks to this hard-working, generous, genius of a woman.

It is time to let her rest and be taken care of, but dammit, if I have anything to say about it she will be thought of as a champion, a loyal friend and dominant force in the fight against an uneducated system that refused to look for answers until public outcry backed them into a corner. Nancy stood at the front of that mob, using her phone and computers like an electronic megaphone.

I thank you and I love you Nancy. My world is better because you are in it.

Ohio, Cleveland in particular has been raked over the late night comic coals for years. When will people stop making jokes about the fire on the Cuyahoga river? The last fire was in 1969 people! Give it up. It was one incident that mirrored the collective thinking of the day. Run your factory, dump your waste into the river and move on was a phenomenon taking place all over the country, yet Cleveland seems to be the one forever embedded the countries collective memory. Thankfully the story drew attention to the problem and many investigations spurred changes to the laws regulating our natural resources.

I am happy to report our rivers are clean and thriving with wildlife. You can fish off a handy pier or swim, jet ski, water ski or sit and dangle your feet in the water as you bird watch. You can take a trip on the GoodTime III and tour the sites nestled against the mighty Cuyahoga River. Our water ways and marshes are full of loons, cranes, eagles, owls, song birds, fish, mammals, amphibians and reptiles.

We are proud of our “Emerald Necklace,” a connected series of undeveloped land designated as state parks that travel from one end of the state to the other. I am lucky that a short five-minute drive will place me smack dab in the center of these habitats. We have free access to over twenty-one thousand untainted acres of wilderness where we can walk, hike, ride bikes, go horse back riding, swim, fish, take structured nature hikes, learn about local flora and fauna or just lay out a blanket and read. A short drive from anywhere will have you immersed in nature, marsh life, wet lands, bird sanctuaries, spawning Salmon, rivers, lakes and local animals. Lose yourself in majestic trees, hidden trails, bubbling creeks or challenge yourself on an intense hike over foothills and rough terrain. This vast amount of protected landscape is a true gift given by our forward-thinking elders.

If nature is not on my agenda I can hop on I71 and be in Cleveland proper in under twenty minutes. There you can visit the West Side Market for the freshest produce, meat, cheese, bread and anything else you can think of to eat or cook with.

I can attend festivals that honor our many immigrants, their food, art, dance, drink, clothing and culture.
In one trip I can tour the Rock and Roll Hall of Fame, the submarine S.S. Cod or the restored ship known as the William G. Mather.

If I am looking for education, I can go to Baldwin Wallace University, Kent State, Ohio State, Miami University and many others. I can also hone my skills at Cleveland State, Tri-C or the Cleveland Institute of Art.

A single square mile known as University circle is filled with world-class centers of education, medical training and arts & cultural institutions like the Cleveland Museum of Natural History, Cleveland Museum of Art, the Botanical Gardens, Cleveland Institute of Music, Cleveland Institute of Art, Severance Hall, the Cleveland Orchestra, Western Reserve Historical Society, Crawford Auto-Aviation Museum, The Children’s Museum, James A. Garfield Memorial and Cleveland School of the Arts, all a mere four miles from downtown Cleveland.

In the mood for a fantastic stage show or a good movie? Head to Playhouse Square, the home of magnificent theaters restored to their former glory. Here you will find the Allen, Hanna, Ohio, State, Palace, Westfield, 14th and Kennedy theater. You can experience Broadway, comedy, concerts, dance, plays, opera, family shows and more, all available by car or public transportation.

Lake Erie is surrounded by miles of beaches from Sandusky to Ashtabula. Countless protected areas provide swimming, boating, fishing, diving and anything else you can do in the water. Picnic and camping areas retain a small town feel while offering convenient perks.

Medical experts at the top of their game call Cleveland home. People from all over the globe turn to Cleveland for treatment.

I can turn one way when I leave my drive to experience downtown and all it has to offer in less than twenty-minutes. Or…I can turn the other way and find myself driving simple two lane roads dotted with farms and forests, stopping now and then for a garage sale, flea market, wineries, farmers market, ice-cream or a home cooked meal at a mom and pop eatery.

I have it all! Clean beaches, education, entertainment, nature preserves, foothills and rivers. I can attend local theater at our college or take in big name stars performing in Playhouse Square. We even have a few drive-in theaters up and running, talk about a treat!

I have traveled over this country and I spent time at places I felt I could stay in forever. The U.S.A. has a lot to offer, but I find that what I need is right under my nose. When you hear the name “Cleveland,” I want you to think theater, mixed cultures, music, NASA, public assistant programs, farmland, architecture, nature and good people doing their best to improve their environment.

My grandpa was a unique man, given the times he lived in. He grew up without airplanes, T.V. and supermarkets. He was surrounded by people who all thought, and looked like him, yet he never let that form his core being.

Despite his sheltered upbringing, he never shied away from those of different beliefs, color or race. He was shunned by the majority of his family for embracing people of color, differing religions and social standing. He fell in and out of marriages as he discovered his wives were not as open-minded, or caring as he. Three marriages in all.

My mom, his second born, tried hard to make her marriage work, but my father’s change of religion drove a wedge between them. My mom and grandpa became each others rock, clinging to each other through every storm. I was lucky enough to spend large amounts of time with my grandpa, who in many ways, had replaced my father.

My grandpa ran the largest greenhouse in the country during WWII. (No, I was not alive during WWII, my time in the greenhouse came much later.) I grew up in that greenhouse, working the conveyor belts, making baskets and tending to the many greenhouse cats kept to keep the rodents at bay. When the work day was done, grandpa and I would often walk by the river or find a nice patch of ground for a picnic. It was during these down times that he filled my head with much of what would become “me.” Things that just seemed right, common sense thoughts that riled others.

He was the voice of reason, common sense and peace in my life, a voice that plays in my head whenever I face a new dilemma.

Things I learned from my grandpa?

* Don’t let stereotypes sway your judgement when meeting new people. He told me every person he worked with was just like him. They had families, they loved, they slept, ate, celebrated, supported each other and felt loss, just like I did. He said they worry over sick kids, homework and mourn their dead, just like us, they just do it with different colored skin. He also told me he had learned a lot of great things from people from different cultures and if I was smart, I would keep my ears open and learn as well.

* He told me religion is very sacred to each person and that I must respect each person’s belief. He encouraged me to learn about multiple religions and pick the one that felt right for me or embrace them all. He often told me, as we sat at the river bank, that any place can be sacred, if we look for the beauty and be thankful for it. He told me that sitting at the edge of the river, marveling at nature, the local creatures and trees in the forest could be as powerful as any church. If I appreciated, and thanked “my” god for this world I was doing ok.

He said no matter my beliefs, the important thing was to “do unto others.” Treat people with kindness, understanding and a lack of judgement as we never knew what burden people are dealing with when we encounter them. He told me to help those in need, care for those in trouble and never feel like I was better than anyone else just because my life was going well at the time…it could change at the drop of a hat.

* He taught me to never hate my father for letting his convictions get in the way of his family life. He told me my father was following a path he believed in, but he loved me and would be there if needed A.S.A.P. He convinced me to keep my father in my life, to be patient and understanding. It was trying at times, but today my dad and I are closer than ever.

* He taught me to be tolerant of sudden change. When my uncle, his sixth child joined the National Guard during the Vietnam war, he left a clean-shaven youth working on a teaching degree. The same uncle returned home four years later with long hair that framed his face and fell down his back. When my uncle entered the house for his home-coming dinner he was met by his mother, aunts, cousins and a bevy of other family that jumped on his long hair. After an hour or so of badgering my grandpa stood up and told them all to “go to hell!” He said “my son left here a caring man trying to do the right thing, and the same man returned to us! His appearance doesn’t change who he is.” I realized he is right. You can have long hair, tattoos or piercing, but none of that changes who you are. He was the voice of reason in uncertain times, and he molded me in many ways.

* He taught me to appreciate nature, embrace all people, beliefs and to search for reasons for someones behavior before having a knee jerk reaction. He encouraged me to learn something from everyone I met and to fill my life with great people.

* He hit me with the hard reality that not everyone who meets me, would like me. A hard pill to swallow, but I understand it now that I have met people who I didn’t like, but couldn’t quite put my finger on a reason why.

* He told me that the whole world was a temple if I embraced it. He said if I found a brick and mortar building to worship at I should embrace it. If not, revel in my fellow humans, honor nature, help others and promote goodness while battling evil.

I embraced his teachings. I don’t see people with labels stapled to their foreheads, I see them as people working, paying the bills, raising kids and cleaning the toilet.

I sowed my oats. I sneaked out of the house, drank, partied, had sex, but I kept returning to the life his words formed. He laid the groundwork for living a life full of people, tolerance and acceptance, I am just thankful that I was smart enough to listen to his lesson so I could incorporate them into my own life.

Thank you Grandpa for giving me the tools I needed to break way from the small minds in my hometown. Thank you for making me feel special and empowered. My hope is that I am embedding these same values in my kids.